December 2008

December 08, 2008

* Source AARP * While caregiving is traditionally associated with women, 45% percent of today's working caregivers are men. * Nearly two-thirds or 63% of all caregivers ages 51-64 work, most full-time; 75% are primary caregivers. * Up to 30% of employees have eldercare responsibilities, and 40% of those also have children at home. * Eighty percent of older adult care is provided solely by family and friends. * The average length of caregiving is eight years.

December 05, 2008

When Peter Nicholson’s mother suffered a series of strokes last winter, he did something women have done for generations: he quit his job and moved into her West Hollywood home to care for her full time.

Peter Nicholson quit a job and moved in to care for his mother, Bernice. He has lost 45 pounds and developed anemia in part because of the stress, and he is running out of money. But the hardest adjustment, Mr. Nicholson said, has been the emotional toll.

“The single toughest moment was when she said to me, ‘And now who are you?’ ” he said. “My whole world just dropped. That was the pinnacle of despair.”

Mr. Nicholson, 53, is part of a growing number of men who are providing primary care for their aging parents, usually their mothers.

The Alzheimer’s Association and the National Alliance for Caregiving estimate that men make up nearly 40 percent of family care providers now, up from 19 percent in a 1996 study by the Alzheimer’s Association. About 17 million men are caring for an adult.

“It used to be that when men said, ‘I’ll always take care of my mother,’ it meant, ‘My wife will always take care of my mother,’ ” said Carol Levine, director of the families and health care project at the United Hospital Fund. “But now, more and more men are doing it.”

Often they are overshadowed by their female counterparts and faced with employers, friends, support organizations and sometimes even parents who view caregiving as an essentially female role. Male caregivers are more likely to say they feel unprepared for the role and become socially isolated, and less likely to ask for help.

Women still provide the bulk of family care, especially intimate tasks like bathing and dressing. At support groups, which are predominantly made up of women, many women complain that their brothers are treated like heroes just for showing up.

But with smaller families and more women working full-time, many men have no choice but to take on roles that would have been alien to their fathers. Just as fatherhood became more hands-on in the baby boom generation, so has the role for many sons as their generation’s parents age.

Mr. Nicholson said his family had not discussed who would take care of his mother, Bernice, if she became frail. But as the unmarried child among his two siblings, and the one who was most readily available, he had spent increasing time with her as she aged.

Still, he was not prepared for the isolation of full-time care. “There’s absolutely no involvement in the outside world,” Mr. Nicholson said. “When I finally get out to a Dodgers game, walking to the car, I say, Oh, this is what life is about. I forgot about this. I can’t be doing myself any good by not getting out of here.”

Isolation affects women as well, but men tend to have fewer lifelines, said Donna Benton, an assistant research professor of gerontology at the University of Southern California and director of the Los Angeles Caregiver Resource Network. Men are less likely to have friends going through similar experiences, and depend more on their jobs for daily human contact.

“That’s the harder part for men, to find someone to talk to,” Dr. Benton said. “It’s the emotional side: the guilt, the sadness, the anger. For men it becomes more stressful because they can’t talk about it. They feel cut off.”

And then there is the inevitable question: What happens when I have to bathe her?

“That’s where the rubber meets the road,” said Donna Wagner, the director of gerontology at Towson University and one of the few researchers who has studied sons as caregivers.

For Mr. Nicholson, the whole experience has been a journey into the surreal, but especially at bath time.

Though he is not squeamish about it, he said: “The weirdness permeates our relationship. She doesn’t know if I’m her husband or her boyfriend or her neighbor. She knows she trusts me. But there are times when it’s very difficult. I need to keep her from embarrassing herself. She’ll say things like, ‘I adore you.’ I don’t know who she’s loving, because she doesn’t know who I am. Maybe I’m embarrassed about it — it’s my mom, for Christ sakes. But it’s weird how the oldest son becomes the spouse.”

Matt Kassin, 51, said he had no role model for male caregiver in his family. His father had been distant; he, in turn, had been the rebellious son. “I was the son who went through divorce, who needed to separate from my mom when I was teenager,” Mr. Kassin said. “I’m the son that wanted distance. Now I’m the son who hears every morning, ‘It’s so nice to hear your voice.’ ”

On a recent evening, Mr. Kassin visited his mother, Doris Golden, in her Manhattan apartment. Ms. Golden, 82, is in the early stages of Alzheimer’s and still lives independently, but relies on Mr. Kassin to arrange her schedule, pay her bills and make sure she remembers her daily tasks (his sister also helps).

His care has surprised his mother. “When he was young, I couldn’t get him to raise a finger,” Ms. Golden said. Her conversation looped repeatedly back to this point, and with each return, Mr. Kassin grew more irritated. That was when he was a teenager, he said, sharply; hadn’t he been more attentive since?

Finally she looked at him tenderly and asked, “When did I start relying on you?”

Interviewed apart from his mother, Mr. Kassin said: “It’s kind of like living my nightmare situation. But it’s a great opportunity here. Here’s the woman who nurtured me. She now is the child. You worry if you’re up for the challenge. If I don’t make this challenge, what kind of human being am I?”

In past generations, men might have answered this question by pointing to their accomplishments as breadwinners or fathers. Now, some men say they worry about the conflict between caring for their parents and these other roles.

In a 2003 study at three Fortune 500 companies, Dr. Wagner found that men were less likely to use employee-assistance programs for caregivers because they feared it would be held against them.

“Even though the company has endorsed the program, your supervisors may have a different opinion,” Dr. Wagner said. “I had a man who worked for a large company with very generous benefits, and he was told that if he took more time to go with his dad to chemotherapy, he was at risk of losing his job. He ended up not going with his father.”

Mr. Kassin said that although his employer had been understanding, he was reluctant to talk about his caregiving because “I think it would be looked at like, when they hire a male, they expect him to be 100-percent focused.”

“I don’t want to appear to be someone who has distractions that detract from performance,” he said.

For many men, the new role means giving up their self-image as experts, said Louis Colbert, director of the office of services for the aging in Delaware County, Pa., who has shared care of his 84-year-old mother with his siblings since her Alzheimer’s made it necessary.

“I’ve been a professional for 32 years,” Mr. Colbert said, “but yet I remember the first time I was driving to my mother’s house, being afraid because I didn’t know if I knew what to do.”

Once a year, Mr. Colbert organizes a get-together for male caregivers. The concerns they raise, he said, are different from those of women in support groups. “Very clearly, they said they wanted their role as caregiver validated, because in our society, as a whole, men as caregivers have been invisible,” he said.

This invisibility can extend to hospitals and nursing homes, said Amy Torres, helpline director at Fria, a national nonprofit organization based in New York that represents family members and residents in long-term care facilities.

“Nursing homes have a very difficult time dealing with male caregivers,” Ms. Torres said. “It’s unusual for them. The male caregiver is made to feel their interest in their relative is inappropriate. Our male callers say they’re made to feel what they’re doing is unusual, that it’s wrong.”

She gave the example of a son who was the health care agent for his mother and wanted to be in the room when the staff changed her diaper because he was concerned about her skin condition. “The staff refused to allow it,” Ms. Torres said. “They said the mother’s dignity was at risk.”

After two weeks of pressing, she said, he finally got his way. With a daughter, this would not have been an issue, Ms. Torres said.

And even when they are acknowledged, for many male caregivers, as for women, there is the lingering sense that whatever they do is not enough.

Mr. Nicholson said he knew this feeling too well. As a teacher, he could measure his contribution by the students’ progress. But with his mother, he can only watch her decline.

“I’m always asking myself, Am I even qualified for this?” he said. “Just because I love her a lot doesn’t mean that I have any idea if I’m doing the right thing, or doing what’s best for her.”

He sounded exhausted, rattled even.

“I don’t know if this is just the musings of someone who’s on the verge of tossing everything and putting her in a home,” he said. “But this is a very revealing journey about who I am to me and my family, and what’s important to me.”

December 03, 2008

We are faced with issues in our country many of us would never have imagined. We have lost, in one way or another and are concerned with how to protect ourselves from financial devastation and retirement protection. Who would have ever thought that their business would out live Wachovia or Lehman Brothers? Would you ever have thought that our government would have to bail out major car manufacturers? As strong as our country once was, would you have imagined this global financial crisis?

We hear so much about pre-planning, asset protection, financial advisors, estate planning and healthcare planning. Do you really understand what it means to you and your family? Do you think it is only for those who are wealthy?

Proactive planning is important in all aspects of our lives from long term wishes to short- term daily goals. There is good reason for statements such as plan your work and work your plan. Having a strategic life plan is even more critical today than ever.

I know, who needs it, too young to consider it, mom and dad have already taken care of it, no time for it, etc., etc. I used to think the same, until I learned of real situations. Cases where a car accident took the lives of a married couple leaving their children in the hands of the state. Where adult children gave up their careers to move back home to care for mom, putting their career and family plans on hold. Or how about the situation where the healthy spouse takes a turn for the worst, goes into a nursing home and depletes the savings of the couple just before the ill spouse needs it?

Before and even more today, the thought of having to hire an attorney or utilize the services of a financial advisor seemed expensive and to some extent, unnecessary for so many of us. Why, we want to save our money – hold on to as much as we can, not spend it on services like financial or legal advice, right? Why do we need to consider or engage in home care services when the boy down the street can help out or the adult children can find time in their lives to support the parents?

As a home care agency owner and a national speaker on the importance of pre-planning, I have had first hand knowledge and experience of what can happen without a plan.

Here is how you can help your friends, colleagues and loved ones consider the importance of planning:

Family Matters – with the holidays quickly approaching, there is no better time to “have those uncomfortable discussions”. Take a proactive approach to ensuring that the financial and health related areas are observed and planned for. Make sure that your mom and dad have their protection plan in place and updated. Never assume that it is. Protect your own family and assets. Take the time, yes and the costs associated with obtaining professional advice from an estate planning or elder law attorney, financial advisor and a healthcare professional. Protection and planning includes preparation for aging, changes in medical condition as well as the preferred primary residence. Aging in place with in home care assistance verses a stay in a nursing home will vary in costs and in the life plan.

Wealth Management - is for all of us, regardless of Net worth. This is estate planning and what that means is ensuring that the disposition of your assets during life and after death is handled in the manner in which you want it to be. Of course, proper planning will help you avoid complicated and unnecessary tax implications, lost value in securities, real estate and other assets. Gifting and transferring your assets is not as simple as it once was or may seem. Professional advice from an estate planning or elder law attorney can save you and your family from losing the assets you have worked so hard to achieve.

Health Care Planning – It is no secret that there will not be government funds to support our aging and sandwich generation. It is up to each one of us, as individuals to plan for and protect our needs for health care. What that means to you is purchasing and/or reviewing your current medical and supplemental insurance plans. Don’t assume that a long-term care insurance plan purchased years ago will cover your aging needs of care. Review the particulars of the policy – does it illustrate home care? What level of service? For what duration? Daily, Monthly? Is there a maximum? If your wish is to age in place, take the appropriate steps to consider your aging needs such as assistance with your activities of daily living, financial management of regular tasks such as bill paying and considerations of facing a decline in health such as needs for nursing care. An attorney can explain and help you with your living will, power of attorney and healthcare directives. It is an important step that must be considered.

Alternative Options and Resources – Depending on your situation, there may be assistance available for you. Benefits such as the Veterans Aide and Attendance Special Benefit which provides a monthly amount to cover home care. Without knowing what resources are available, you may be missing out on key financial and caring support.

Don’t allow our current economic instability to cloud your better judgment. You can protect yourself, your loved ones and your hard earned assets. With the proper planning you will benefit from immediate relief and the peace of mind you deserve.

December 01, 2008

Web MD defines caregiver burnout as a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude -- from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able -- either physically or financially. Caregivers who are "burned out" may experience fatigue, stress, anxiety, and depression. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones.

Caregivers often are so busy caring for others that they tend to neglect their own emotional, physical, and spiritual health. The demands on a caregiver's body, mind, and emotions can easily seem overwhelming, leading to fatigue and hopelessness -- and, ultimately, burnout.

The follwoing is a list of the symptoms of caregiver burnout:

Withdrawal from friends, family and other loved ones. Loss of interest in activities previously enjoyed. Feeling blue, irritable, hopeless, and helpless. Changes in appetite, weight, or both. Changes in sleep patterns. Getting sick more often. Feelings of wanting to hurt yourself or the person for whom you are caring. Emotional and physical exhaustion. Irritability.

November 28, 2008

It is estimated that over 80% of incidents affecting millions of seniors who are the victims of financial exploitation each year go unreported. Seventeen states and Washington, D.C. have passed laws that require bank personnel to report suspected cases of elder financial abuse and hold banks liable should they fail to report suspicions of elder financial abuse. Another 33 states recommend that bank personnel report those suspected cases.

November 25, 2008

In a new online survey conducted by Harris Interactive and commissioned by the Alzheimer's Disease Screening Discussion Group (ADSDG) titled, "Alzheimer's Disease: Current Attitudes, Perceptions and Knowledge," it is reported that nearly 95% of the survey participants agreed they would encourage a loved one to seek early diagnosis if they suspected signs of Alzheimer's disease (AD).

However, the report goes on to state that of the 34% who previously thought a loved one had the disease, only about one-quarter prompted that person to take an AD screener test, and less than 40% encouraged initiating a conversation with his or her doctor.

Given the rise of AD as the baby boomer population ages - up to 16 million are estimated to have the disease by 2050 - these new survey results are particularly important. The ADSDG encourages everyone with a loved one age 55 and over to visit http://www.seethesigns.com if symptoms are suspected. The link has resources to learn more about the disease, its signs and symptoms, and has an online memory screener one can complete on behalf of a loved one.

November 19, 2008

A do-not-resuscitate (DNR) order is an instruction, issued for a specific person, by a physician providing treatment for that person; the instruction advises that the person has indicated that he or she does not want cardiopulmonary resuscitation (CPR) in the event that his or her heart stops beating or he or she stops breathing. A DNR order in a person's clinical record instructs agency or facility staff, emergency medical services personnel (including ambulance personnel), hospital staff and physicians not to initiate CPR.

November 17, 2008

A health care proxy is a document created by a person (the principal) that names another person as his or her health care agent to have the authority to make decisions if and when the principal is determined to be incapable of making medical care decisions for himself or herself.

November 14, 2008

Advocating for your loved one can be a difficult task. You should ensure that you are comfortable taking on this responsibility and have ongoing conversations with your loved ones about their wishes for end-of-life care. One of your most important responsibilities will be to communicate with your loved ones healthcare providers to ensure your loved ones wishes are honored.

How to talk with a doctor if you are a healthcare agent:

Establish open communication with the doctor. Make an appointment to speak about your loved one's care.Be assertive in expressing your wishes. Clearly state the reasons behind your requests without being hostile.Ask questions. To be effective and to make informed decisions, learn as much as possible about your loved one's condition and prognosis.Ask about the goals of the treatment plan - often. A physician's definition of recovery can be different from what is acceptable to you or your loved one. Seek the assistance of a social worker or patient representative if necessary. Such professionals can help improve communication between you and the physician.Don't be afraid to speak to the facility's administration. If the physician is unresponsive, go directly to his or her superiors, including the chief of medicine, risk manager, hospital lawyer or administrator.